Jwrhn R and Mjrhn live in Utah, USA. He was 64 when he was diagnosed in April, 2015. His initial PSA was 10.00 ng/ml, his Gleason Score was Unknown, and he was staged Unknown. His choice of treatment was Non-Invasive (Other). Here is his story.

I have been on an informal plan of watchful waiting since 2005. I have a number of co-morbidities including, Traumatic Brain Injury (TBI) from car accident in 1997, hereditary iron overload which has damaged my liver and pancreas, NASH, pre-diabetes and the most concerning to me is I have been recently also been diagnosed with early stage dementia.

I have a young wife and a 9 year old daughter. The most important consideration in the decisions I have made and will make is to preserve the quality of life for my family during the time I have at least some mental capacity.

My PSA history 1.9 (1/92), 2.7 (1/05), 6.4 (1/12), 7.6 (1/13), 7.0 (1/14), 8.1 (1/15), 10.0 (4/15) and 9.1 (7/15). They started doing the fPSA in 2012 and it's been between 10 and 14%. I have been getting up to pee 4 or 5 times a night for the past 20 years and have a minor bother with LUTS, although it's getting a little worse each year. The DRE in April shows firmness...whatever that means.

Obviously the Doc's have been pestering me to have a prostate biopsy for a very long time but I have refused. Not because I have any particular fear of the procedure (I had a liver biopsy last summer which is more difficult and required a day of outpatient hospitalization) but because it appears to be a waste of time and exposes me to unnecessary risk of admittedly rare side effects which could severely diminish my QOL.

From the PSA numbers it appears to me that I probably have the indolent form and the odds that PCa will kill me are much much lower than the odds that liver or pancreatic cancer or something else will get me first, or the most likely scenario where I develop full blown dementia in a few years.

I have agreed to see my primary care provider and continue the PSA testing every 3-6 months to mostly satisfy my own curiosity. I am currently having all the brain studies redone in an effort to get a handle on how long I will remain functionally capable.

I know this is somewhat off topic but seems to me there are probably more than few men facing the dilemma of whether they will die of or with PCa and what the journey could be like. In my case I might not remember any of this in a few years so having it written down somewhere might not be a bad idea. :)

UPDATED

January 2016

The PSA in January 2016 is 10 again has been 9 +/- 1 for the last few years so it's not to concerning.

I also had a brain MRI done in July 2015 and Neuro Phsyc Testing done in October 2015.

The MRI showed microvascular changes involving the "periventricular, deep, and subcortical white matter" with "global cerebral volume loss." When compared with a MRI done in June 2005, a "progressive sequela of brain atrophy and microvascular disease was noted." From what was explained to me a brain MRI cannot really differentiate between the various forms of dementia but they think the findings are consistent with vascular dementia. This is relatively good news but also a bit unsettling, instead of the gradual decline of Alzheimer's I'll likely wake one day and the brain will be gone. I won't know what happened and will spend my remaining days lost in a strange place.

The neuro psych testing shows a progressive decline of my scaled IQ by a point or so a year, it's down to 109 so theoretically at least, I have 10 plus years of average intelligence. The effects of the TBI remain stable when compared to the last testing; "His mental processing speed is deficient. This slowing affects his ability to function across the board causing his thinking to be effortful and inefficient. This slowing means that he may not be able to track the normal pace of conversation or keep up with the events of life as they pass by in real time. The slowing is across all cognitive and mental domains although he has been able to compensate due to his considerable residual abilities."

Clearly my mental capacity is decreasing faster than the PSA is rising but the decrease is not occurring quite as fast as I thought it was. It's possible that instead of full blown Alzheimer's in five to seven years I may have a chance of 10 plus years before the vascular dementia sets in.

I've adjusted my thinking a bit to reflect the latest testing. It continues to make sense not to seek any treatment based on the slowly rising PSA. By waiting until I become symptomatic before I seek treatment I will still have a relatively high chance of 10 year survival. However, if I am mentally incapacitated when symptoms appear, an additional 10 years of survival is the last thing in the world I would want. If I get a condition that will kill me within a few years without treatment but treatment could prolong my life for ten years then I would probably do it if the effect of treatment on my quality of life was minimal.

UPDATED

October 2016

I have been having a lot of pain and numbness in my arms, legs and and lower back for the past couple of months. Wasn't supposed to see my PCP at the VA until January but I needed to refill a couple of prescriptions that had expired and happened to mention the problems in my email requesting the refills. She said it would be a good idea to set me up for an appointment to get X-ray's of the areas given my PSA history.

The x-rays were negative for metastasis but they did reveal extensive bone spurs through out the spinal canal and in most of my joints. A particular concern is my neck showing severe degeneration at "C6/7, associated with 75% right-sided C6/7 neuroforaminal osteophytic encroachment." There were similar finding though less severe throughout my spine. I have also been having a feeling when I pee that I need to go again right after but nothing comes out. They measured my bladder and its retaining about 200cc. They think this could be caused the effects of the dementia, or from the spinal cord being squeezed, or from the enlarged prostate pushing on the urethra. They also did an EKG which when compared to one done a few years ago showed some changes possibly related to the brain or nerves.

I did not have any real concern for mets so I just went in to humor them. I was expecting them to just tell me I was getting old, take Tylenol for the pain, give me the lecture about having a prostate biopsy and send me on my way. Instead they scheduled me for a neurosurgery consult, a cardiology echo and stress test, slapped a 1 month heart monitor on my chest, taught me how to self catheterize, and gave me a prescription for Finasteride. They did not bug me about the biopsy... although the PSA was 11.18 up from 8.68 three months ago. I think the increase was due to banging up the prostate while learning how to self catheterize, the blood for the PSA was drawn a hour later.

For those who might need to self catheterize as part of their treatment, its not to bad after the first couple of days, if anyone has any questions about it I'd be glad answer them

I must say in my case I'm glad that I have put quality of life over quantity of life in dealing with the prospect of PC. I think the neurodegenerative changes to my brain and spine are likely to get me before any PC that I may have. I don't presume to ever tell anyone what their treatment choices should be, that is everyone own very personal decision. But for those who may have other health issues I would advise against making a quick decision regarding treatment/non-treatment. You never know what is going to be around the corner..

I'm planning to continue to watch and wait on the PSA while I get a better idea of the ramifications of the other problems...my provider thinks I need to have the neurosurgery by December but I'm not ready to decide on that yet.

In the meantime I make the most of every day and prioritize my little family.

UPDATED

November 2017

Not much to report since last October continue to watch and wait.

I really don't pay much attention to the ailments, the urologists and neurosurgeons have written me off as a "difficult" patient refusing treatment.

Last April I had a 3T MRI that found a single 6mm PI-RADS 4 lesion, plan to use it as a base line for comparison in the distant future. Still taking the Finesteride, it has dropped the PSA over the course of a year from 11.18 to 4.00 (8 when doubled).

The neurological decline continues, need to self catheterize 4 to 6 times a day. Had urodynamic testing in September which showed no obstruction but a total failure of the bladder to work...they called it a neurogenic bladder.

Making the most of every day, happy with the path I have chosen and living my life in a way that is best for me and my little family...